HSE will not review care for people with Long Covid until new evidence emerges

THE HSE HAS said it intends to review how it cares for people with Long Covid “in due course”, but will not change the interim model of care until new evidence emerges on the condition.

Representatives from the health service, as well as a Long Covid advocacy group, appeared before the Oireachtas Health Committee to answer questions about the delivery of health services for patients with Long Covid.

Long Covid Advocacy Ireland (LCAI) is calling for an urgent review of the interim model of care that sets out how services for the condition are delivered.

Ahead of their appearance at the committee, LCAI told The Journal that there are ‘huge inconsistencies’ in how people are being treated at the dedicated Long Covid clinics across the country, and a lack of knowledge among both GPs and consultants about the condition.

The HSE introduced an interim model of care for the condition in June 2021, which was to be adapted to ensure it was in line with the most up-to-date evidence, but it has yet to be updated.

Dr Siobhán Ni Bhriain, the HSE National Clinical Director for Integrated Care, told the committee that the Health Information and Quality Authority (Hiqa) has recommended waiting to review the care model until more evidence emerges.

“We certainly intend to review it in due course as evidence emerges,” Ni Bhriain said.

The HSE commissioned a survey to measure the prevalence of Long Covid in Ireland last year. Ni Bhriain said that while almost 50,000 people were invited to participate in the study, only 4,671 responses were received.

“Unfortunately, a response rate of less than 10% is a limitation in terms of drawing inferences about the occurrence of Long Covid in the population of Ireland,” she said, adding that other international studies have encountered similar challenges with validity.

To address this, she said the team has secured reconfiguration of the Healthy Ireland 2024 survey to include a focus subset of questions to prove the validity of the estimate of the occurrence of Long Covid in Ireland.

Dr Siobhaan Ni Bhriain at the Oireachtas Health Committee.

Ni Bhriain said that when this report is available in June, “depending on where that takes us, that may indicate a time for a review”.

She also said that when the time comes to review the model of care, the HSE will “certainly” be engaging with patients and advocacy groups. “That’s very much a principle of how we work.”

In her opening statement, LCAI’s Sarah O’Connell told the committee of the “unacceptable and insulting” approach taken by healthcare providers towards the condition.

“In preparing for this hearing, our inbox was flooded with emails from previously healthy people of all ages whose busy professional and family lives have been utterly devastated,” she said.

“Not just from the direct effects of the illness which destroyed their health almost overnight, but also from the trauma of trying to access social, financial, and most importantly, medical supports and being met with misunderstanding, minimisation and often dismissal and disbelief.”

She spoke of one woman, Ann, who was hospitalised for six months after developing Covid in 2022. She was later diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a condition that causes a large increase in heart rate upon sitting or standing.

O’Connell said doctors believed the condition was due to deconditioning and a consultant recommended that she should exercise, but Ann would feel much worse after this.

“She lost 32 pounds and left the hospital feeling more unwell. During those six months, no clinician suggested the possibility of Long Covid despite obvious signs,” O’Connell said.

LCAI’s Imelda O’Donovan said some people with Long Covid also experience feelings of “guilt and shame” because they can no longer contribute to the household or partake in society in the way they used to.

It’s like a form of grief. You’re grieving your former self, the loss of who you used to be and whether you’re ever going to get back to that person that you were.

“You’re having to create a whole new normal and pacing becomes part of life and believe you me, that is so difficult.”

Long Covid clinics

LCAI told the Committee about the experience of some patients who attend Long Covid clinics, who see the limited services available as unhelpful and the clinics themselves as “understaffed, under resourced and not fully operational”.

O’Connell also shared an account from an Irish patient living in France on how Long Covid is treated there during the committee.

When she first became sick in 2020, she saw consultants every month for the first eight months and has easy access to support services such as physiotherapy, speech and language therapy and neurological rehab.

O’Connell said a national online GP training programme organised by one of the country’s leading Long Covid clinicians was established in 2021.

That same year, the French government voted to recognise Long Covid as a long-term health condition (affection longue durée or ALD).

“That brings much of the same protections that disability status for illness brings here. ALD in France acknowledges the illness is a major or long-term illness and one for which the government accepts full responsibility for the costs of the person’s care,” O’Connell said.

Dr Ciaran Bannan, a consultant in infectious diseases, said that every patient who attends a clinic receive a comprehensive medical assessment, which includes a respiratory exam, cardiovascular exam and a neurological exam.

There is currently no approved medication to treat Long Covid, but LCAI said things medications could be prescribed to treat certain symptoms, such as sleep apnea or chronic pain.

Bannan said that other disorders can coexist alongside Long Covid that, when identified in patients at the clinics, can be treated.

Dr Brian Kent said that there are trials ongoing in other jurisdictions, particularly in the US, for potential treatments for different aspects of Long Covid.

Long Covid Advocacy Ireland’s Sarah O’Connell at the Oireachtas Health Committee.

“At the moment, there aren’t any medications that we know will work for Covid in the context of persistent symptoms,” he said.

What we learned from the earlier stages of the pandemic is that it’s really not in the interests of the people that are coming to the Covid clinics for us to be throwing medication at them with us having no real evidence that it is going to be a benefit.

Kent also acknowledged that while most patients improve with time, not all do. ”Our ability to distinguish those people the first time we meet them isn’t always great.”

Lack of data

The issue of a lack of patient data being collected by the HSE was also raised during the Committee.

O’Donovan said while a certain amount of data is been recorded at the Long Covid clinics, it’s largely around the number of patients who are attending, waiting lists and staffing.

“Information regarding comprehensive patient data, that does not seem to be captured. Things like onset of symptoms, what wave of Covid did the symptoms start from, and severity of symptoms,” she said.

She said that people with Long Covid have been keeping track of their symptoms since they began “because we didn’t know what was happening”.

“So there’s a massive amount of information data out there, but nobody has been asking for it.”

Social Democrats TD Róisín Shortall also questioned the operational hours of the Long Covid clinics, in what she called “a very limited time window”.

Data provided to Shortall stated that the clinics receive €6.6 million in funding for staffing and that each clinic has between four and five staff associated with it, but many only operate from between two-and-a-half and four hours per week.

LCAI’s Sarah O’Connell said the group would like for the clinics to be answerable regarding to how their budget is being spent.

“To give you one example, the Limerick clinic was one of the last to open and they said they run one clinic every second week and they can only see two-to-three patients per clinic, so that’s four-to-six patients per month which is astounding.”

When Shortall asked the HSE about the operational hours, Assistant National Director for Strategy and Planning Dr Catherine Clarke said the hours “vary”.

“Some of them are longer than five hours and they will often extend if there is more people to be seen on the individual days,” Clarke said.

“Obviously, we don’t have regular data on that because clinics can run over, but there are also a lot of virtual clinics that happen as well and they would take considerable time with patients as well.”

Cannan said there is ”an awful lot of work” being done outside of the clinics themselves when patients are referred to physiotherapists or occupational therapists, for example.

Children

Shortall also raised the issue of children with Long Covid. There is currently no dedicated Long Covid clinic for children in Ireland, and the clinics do not accept children under the age of 16.

One woman told The Journal of how her teenage daughter has had Long Covid for two years and suffers from extreme fatigue and missed her Junior Cert due to her symptoms. She described being “bounced around from doctors” and were given little to no helpful guidance.

Ni Bhriain said that when developing the interim model of care, the evidence at the time was that children’s symptoms were resolving quite quickly, but that there has since been “an emergence of a number of children who are having ongoing symptoms and conditions”.

She said the evidence suggests that children’s symptoms can be very diverse, “and generally, the paediatrician community feels that they are best dealt by generalist paediatricians with referrals to the specialists as required”.

LCAI’s O’Connell said that Long Covid in children has never been spoken about, and the group feels that this is reflected in the clinic provision.

She said there is a clinic in Connolly Hospital that will treat children with “fatigue-based illnesses”, but the clinic is not using the term Long Covid, which she said is concerning to the group.